Saturday, August 9, 2008

More on Mental Health

Some of you may have heard about/read a recent news story about Terri Stimmel, a woman convicted of killing her roommates cat.

You may read the story and be shocked by her actions.

I, on the other hand, read that story and was immediately saddened by the fact that she had not had proper mental health help. The story quotes her as saying that she had "uncontrollable impulses". Could it have been OCD? Another issue? Could it have been prevented by medicine and counceling? (Both of which she is currently receiving.)

Fortunately she is finally getting the help that she deserves.

Unfortunately animals died, the owner of the cat is suffering and Terri's life will never be the same. She is painted as a monster but no one is addressing the real issue...

Our health care system is failing our most vulnerable people... those with mental health issues.

There is one fact (among others) that was left out of all of the news stories about Terri.... she was born premature. Yep, yet another former preemie with mental health issues.

I have been very open on this blog about Paige's struggle with anxiety and OCD. She has hurt herself, hurt her brother and had thoughts of hurting her father and I. She makes innapropriate statements in front of others. She has thoughts that are too scary for me to mention here. All because of her OCD "thoughts". There are times when I want to crawl in a hole, bury my head in the sand, deep below reality and never talk about it again.

Then I get letters from other adult preemies who thank me for being honest. They need to know they are not alone. The letters from parents of kids, who are the same age as Paige, hit me hard too (although I wholeheartedly appreciate each and every one of them).

The kids are hurting. Families are hurting.

Who will take care of our kids when they are adults and out on their own? When we die? What happens if they can't afford mental health care? What happens when they can't work because of mental health issues?

Our kids WILL grow up. There is an entire group of kiddos who were saved at the edge of viability who are now having issues like Paige.

Will the system be there for them?

It sure isn't there now. It wasn't there for Terri.

23 comments:

mom of 3 gorgeous children, lilike, locke, anjeni said...

I feel sorry for the poor lady. Thank gosh she is getting the help she needs now. Incase it got worse. Then she may have ended up hurting humans also. Your a good mom and are there for paige. She has plenty of people who love and care and are there for her. a great support system. Paige will be fine. A mothers love is always there to guide her children in the right direction.

mom to lilike locke and anjeni said...

You can see the story of another precious preemie. A little boy named Max born at 24 weeks. Whos stay in hospital was at Flinders Medical Centre NNU. Max was born on the
22nd November 2006. Click on the link below to follow Max's story from birth in 2006 to May 2008.
http://www.maxsstory.blogspot.com/

ThePreemie Experiment said...

mom of 3... wrote, "A mothers love is always there to guide her children in the right direction."

Oh how I wish that was really true.

I'm sure some of the mothers of the people in prison loved their children. Yet they did wrong.

If only I could hug it all away. If only hugs and love would cure Paige. If hugs and love were the cure, Paige would be better than fine.

Anonymous said...

From Laura

Oh, how I long for the day when there's no such thing as mental health care!

Health care is health care and mental health care is just another type of health care. We don't separate out health care for diabetics, for example. Why do we separate mental health care from other physical health care?

Important research about mental health issues such as bipolar, autism, and schizophrenia is currently being done. The United Mitochondrial Disease Foundation (www.umdf.org) is sponsoring research that may have great application to mental health disorders and disorders of aging such as Parkinson's and Alzheimer's. I really wonder how many of our preemie children were premature because of a metabolic disorder such as mito.

There is not always an easy answer for those of us who have family members with mental health issues and pervasive developmental disorders.

Anonymous said...

From Helen Harrison:

I think our children's problems can be directly traced to the brain abnormalities that accompany prematurity -- especially extreme prematurity, and especially when the children are put on ventilators (see post # 19 in the previous emphysema thread for just one example of the brain damage that ensues).

In addition, there are the enlarged ventricles, the white matter (and gray matter atrophy), and the seizure disorders that afflict so many of our children.

25% of VLBW preemies are now testing positive for autism on tests given early in childhood. I've heard that as many as 40% of ELBW (<1000 gram) children are testing positive as well. (I don't think this is mitochondria- related, in the vast majority of cases.)

Unfortunately love and guidance are rarely enough to overcome the resulting challenges -- though a highly involved family providing life-long home care, may be able to prevent their preemie(s) from ending up in the criminal justice system.


Helen

Anonymous said...

"life-long home care"

Something undemeaning is more appropriate. These are thinking, feeling, and intelligently expressive people. Why not work toward building a positive and self-determining life instead of focusing around care and shepherding of adult individuals, who have the same needs and wants as any one else.

Anonymous said...

From Helen Harrison to Anonymous who seems to find a "highly involved family providing life-long care" to a severely mentally ill member to be "demeaning:"

There are many "thinking, feeling, and intelligently expressive people" in our prison systems and mental hospitals, and, to my mind, that is usually a far more demeaning situation than supervised care within the family.

Helen

Scott said...

Thanks for the comment on my blog!

I love this site. I wish I had found it a few months back.

Have a spectacular day.

terri w/2 said...

Anonymous 2:14 said that life-long home care is demeaning because they "have the same needs and wants as any one else."

No. .they DON'T have the same needs as everyone else. When a family is faced with severe, multiple disabilities, medical fragileness, or mental health issues in their children, they are no longer just "parents" - they are caregivers. .it is demeaning to think that what many of us on this blog are doing for our children is simply "parenting." I've never been a parent - I've been a caregiver, providing intensive in-home care for my preemie twins. I prefer to refer to this as it truly is.

Anonymous said...

Helen Harrison here:

I've got to agree with Terri w/2 about the caregiver role.

This is not ordinary parenting, it is a life-long, full-time job. My husband and I worry a great deal about what will happen to our 32-year-old preemie when we can no longer take care of him. Should his full-term 28-year old sister then assume the responsibility, perhaps to the detriment of her own childbearing and other life choices?

What we want for both our children in this situation is the least restrictive and least bad outcome. It's hard to know what that is.

Helen

ThePreemie Experiment said...

Terri wrote: "I've never been a parent - I've been a caregiver, providing intensive in-home care for my preemie twins. I prefer to refer to this as it truly is."

I can completely relate to Terri's comment. When Paige was small I once asked hubby, "I wonder when I'll get to simply be her parent instead of her caregiver." I did not feel like a parent at all.

I'd like to say that I feel like a parent to her now. At times I do. At times I do not.

Does this mean that I love her any less? Absolutely not. As a matter of fact, it is the love and devotion to her that keeps me fighting for her.

And, I can say without a doubt that I never realized how much I did not feel like a parent until I had Tyler (who was born almost full term). I immediately felt like a "mommy" and only a "mommy" when he was born.

On a side note... it's nice to "see" you again Terri! I've sent a few emails but I have a feeling they aren't getting to you, just like they weren't getting to Helen and Chris either. Hugs.

future of hope said...

it is demeaning to think that what many of us on this blog are doing for our children is simply "parenting." I've never been a parent - I've been a caregiver, providing intensive in-home care for my preemie twins. I prefer to refer to this as it truly is.

I really think that a person can be both. My preemie/disabled child is my second child, and I don't feel like less of a parent to him than I do to my firstborn. True, his needs are many and demanding. But the intense, mama bear/cub love I feel for this child sticks what I do firmly in the column of "parenting", not merely "caregiving". It is not "normal" parenting perhaps, but it is what is necessary to raise *this individual* child.

Anonymous said...

Thought this resource might help:

http://www.nami.org/

Joan

Anonymous said...

There are moments--even weeks and months of more easy-going parenting--but tonight, in a heartbeat, I flipped to caregiver/nurse for Vic--when he said, just before climbing into bed, "I don't feel well. My head hurts." So, I lay beside him till he fell asleep and then I got out my stethoscope to get a baseline heart rate and rhythm. And I will be checking till I go to work, to be sure his shunt isn't failing and causing an unstable heart rate and rhythm. I will ask Bill to wake him at least once during the night, too, to be sure that his level of consciousness is normal, that he can be wakened.
Yup. Caregiver. By instinct.
Chris and Vic

Anonymous said...

To Chris from Helen:

We know the drill here in our house, and our hearts goes out to you all!

Helen Harrison and family

Anonymous said...

Helen Harrison corrects,

Our hearts "go out"... And I mean it, Ed is holding his head tonight, too. It may just be because of his new hair cut, but we never take anything for granted...

Stay strong and keep us informed,

Helen

terri w/2 said...

Re: mental health issues. .

We too, are dealing with a mental health issue in one of my twin daughters here - she's been diagnosed with non-verbal learning disorder, and very high functioning autism. .she is extremely verbal, and one on one most people would not know there are issues. .

But BOY, are there issues. .

Recently, an eating disorder reared it's ugly head. .now there will be the argument that eating disorders are extremely prevelant in society now, and I agree! - but I cannot help feel that this is somehow a delayed preemie thing for her. She has always been weird in her eating habits - an all day grazer, very very picky, etc etc. .well, once bulimia hit, we were in a whole new ballgame.

We found out about mental health services.

They don't exist. At least for MA patients. .

She started going to a counselor (which we paid for completely out of pocket) as this counselor would not take "medical assistance". .the only counselors that would take MA patients are through social services, and the waiting list is LONG.

The counselor wanted her hospitalized in a treatment program - no treatment program would accept an adult MA patient in our state. The cost was beyond what we could afford. So she continues to go to the counselor.

She is slowly recovering, but I am sickened by the lack of services. I am reminded once again of the
"save 'em but don't serve 'em" mentality that exists for our preemies and their families.

Thanks PE for bringing up this topic.

T

Anonymous said...

"Recently, an eating disorder reared it's ugly head. .now there will be the argument that eating disorders are extremely prevelant in society now, and I agree! - but I cannot help feel that this is somehow a delayed preemie thing for her. She has always been weird in her eating habits - an all day grazer, very very picky, etc etc. .well, once bulimia hit, we were in a whole new ballgame."

Seriously?!?!?!? Sometimes I think that there are people here who will blame anything and everything on prematurity.

Eating disorders are psychological in nature and typically stem from self esteem issues. They aren't neurologically based. While low self esteem can be of a psychological nature, the eating disorder itself that has stemmed from it is not. It is merely the person acting out because of that low self esteem.

I think you might want to rephrase and say that your daughter has some self esteem issues due to prematurity that have resulted in bulimia. Not that her bulimia is caused by her prematurity.

ThePreemie Experiment said...

Please forgive my absence. My laptop is infected and I don't know how to fix it. So, I have to wait my turn (between hubby and Paige) for the PC.

Chris and Helen, please send an update through. I hope all is well with your boys.

Paige has had a rough few days too. She has been saying that she feels her heart is going to jump out of her chest. She says that her heart is beating fast and that she is dizzy.


Anonymous wrote: "Eating disorders are psychological in nature and typically stem from self esteem issues. They aren't neurologically based."

Dear Anonymous... Eating disorders and OCD *can* go hand in hand. Google it and you'll see. I didn't have to google it. Why? Because Paige has OCD and also has early signs of an eating disorder. I didn't even recognize it because she is so young. Her psychiatrist was the first to bring it to my attention. He has stated, on more than one occasion, that preemies face an increased risk of mental health issues, stating that OCD is prevalent.

I know other preemies with eating disorders. Some of them starting at a young age. It has nothing to do with self esteem.

I would also like to point out that Terri was not saying that her daughters bulimia was 100% due to her prematurity. Her words... "there will be the argument that eating disorders are extremely prevalent in society now, and I agree! - but I cannot help feel that this is somehow a delayed preemie thing for her. She has always been weird in her eating habits - an all day grazer, very very picky, etc etc. .well, once bulimia hit, we were in a whole new ballgame."

The point that we all should be taking away from Terri's post is that affordable mental health services are crap.

mom to lilike locke and anjeni said...

Lilike as a baby was very chubby. She was a term 7 pounder baby and would demand and guzzle 4 hourly feeds in the NNU. Im told only sick babies need to be on a 4 hourly on a 4 hourly schedule. She started solids at 4 months and would have all of that and bottles of formula. But now shes so picky she will not eat all her breakfast or dinner just small portions and leave some of her food left in the lunchbox. At 4 years old she was average weight for her age.

Natalie and Abigail said...

I also applaud you for speaking out and your honesty. Mental illness still carries such a stigma. I'm convinced if all the people who have it would just talk about it like it was "normal", it would help tremendously.

I've also been very honest on my blog about my struggles with depression and my need for medication. Most of the people in my immediate life know I've been hospitalized and had a suicide attempt. I have no shame in it. It is a medical fact that stemmed from a biological/psychological situation.

OCD is so hard - especially, I think, the unseen thought processes. It's easier to understand a "Monk" character whose behaviors are visible. But reoccurring and persistent thoughts have no visual signs - until the person begins to follow their directions.

When I was at my most ill in 2003, my OCD tendencies increased (due I think to the anxiety from the PTSD I was experiencing) and I suffered the overwhelming and reoccurring images of cutting myself. IF ONLY, I "obeyed" them, they would go away. They didn't of course, they only intensified. Cutting immediately gets one labeled as a Borderline Personality, and I tried so hard to explain that I thought it was OCD related. I'm not sure anyone ever believed me.

Continue to fight for your daughter. I will fight with you to advocate honesty and education in mental illness so that one day it may get the attention it deserves - and lose the stigma it does not.

Anonymous said...

From Helen Harrison to Anonymous who thinks eating disorders are unrelated to prematurity:

Check out the literature -- prematurity is *strongly* related to eating disorders and severe GI problems both -- in the NICU, after the NICU, and throughout life.

Many of our children cannot ever eat normally -- the rate of tube feeding is high, anorexia/fail to thrive is common, gagging/ vomiting/("bulemia"--if you will) is also common, and it has little, if anything, to do with self-esteem.

It is based in GI issues and brain abnormalities, and the two -- GI and brain disorders -- are related, and both are highly related to prematurity.

Helen

Anonymous said...

This has nothing to do with being a preemie. She has had many opportunities for mental health. She has chosen to lie, cheat, and steal from others to get her way, along with her using her disability to get what she wants. She lived with me for a few months. One day my black lab started throwing up for days on end, and started having hip problems, and to this day still has problems. He favors the right side one day and been that way ever since. I was shocked to see the articles today. She is also convicted of identity theft as well, surprised that never made the papers.

http://www.state.mi.us/mdoc/asp/otis2profile.asp?mdocNumber=694686

Some people just are not worthy of owning a pet. I know many other women who are liars that are not preemies.